Rolling Back has been published in paperback and is available on Amazon for $6.99 ($6.64 for Amazon Prime members). There is also the Kindle version that costs $2.99. I have provided links to each of them below.

Writing and publishing Rolling Back as been a personally rewarding experience that I wouldn’t trade for anything. Several people have urged me to write another, and I will probably try. However I think I’m ready for a change of pace and may attempt a fiction novel next. I’d be interested to hear your thoughts.

This is the cover for my new book. The art is a slightly modified version of one of my late wife’s paintings.

My book, Rolling Back: Through a Life Disabled, has been published and is available as a Kindle version on Amazon. You don’t need a Kindle to read it, you can read it on any computer or any tablet for smart phone using the free Kindle app. Kindle owners who are Amazon Prime members can borrow it for free.

Rolling Back will be available as a paperback in a few weeks. Right now it is only in the Kindle format, but will be expanded to include other e-readers in three months. The price for the Kindle version is just $2.99. If cost is an issue I hope to be able to offer it free for five days on Amazon. When that happens, I will let everyone know.

It is time for my annual update of “Chronicles of Disability.” However rather than simply cover the changes that have happened this year, I have decided to add some new content. This is partially due to my work on a new book I am writing which will tell the story of the journey (or should I say forced march) that my wife and I traveled through the jungles of disability. My own struggle with inclusion body myositis began in 1985, 11 years before I was formally diagnosed, and it continues to this day.

Part of the new content is a gallery of photographs, some new, some from earlier posts on this blog. My goal is to eventually put the entire visual record of my attempts to adapt to inclusion body myositis in one place, organized in chronological order.

This past year has been very difficult. It began with grieving for my wife who lost her battle with myotonic muscular dystrophy October 11, 2012. That grieving process will probably never end although it does change and has become less intrusive on my daily life. During that time I have also experienced the worst decline of physical function of any previous year. Most of that physical loss has been focused on my shoulders, arms and hands. I can no longer hold a Beefeater on the rocks, a Johnny Walker Black with a twist of lemon, a Cadillac Margarita, or even a glass of Petite Syrah. I also can’t hold a glass of water, but that seems to be a minor inconvenience by comparison. Dressing myself is now completely out of the question as is holding a camera or picking anything up from the table, bed or floor. Eating has been reduced to a process resembling a scene from a Monty Python movie. Getting anything from a plate to my mouth involves a slinging motion that frequently sends food flying in unexpected directions.

Now before this pity party gets out of control, I should point out that I continue to find ways to adapt. For example, there is a terrific acrylic beverage cup on Amazon that I use for coffee, whiskey, and wine. It is lightweight, has a handle that fits my hand perfectly and is relatively inexpensive. I can sling it through the air, provided it is only half-full, and generally get it pretty close to my mouth. (There is a slightly larger mug that I use for water.) As to the photography, that problem was solved when I purchased my GoPro and installed the iPhone app to control it. (See an earlier post.) Eating remains an unresolved challenge although I would rather put up with a messy aftermath then resort to being fed. I can only imagine how the pressure to eat quickly and my swallowing problem would combine, with serious consequences no doubt.

Voice recognition continues to get better with each iteration. Now my new iMac with its Mavericks operating system has built-in voice recognition that is almost as good as Dragon Dictate but has the advantage of being launched immediately by simply pushing the function key twice. I still use Dragon Dictate for the longer projects such as this post.

When I was diagnosed in 1996, we lived in this large home with all the bedrooms upstairs!

Along with a business partner (not my wife, who is shown here), I had my own advertising agency in San Diego.

by 1997, I was falling a lot and using a walking stick for balance.

After a couple of falls down the stairs we were rethinking our two story home..

In 1997 we moved to a condo that was easier to take care of and had the master bedroom downstairs.

Our new condo had a huge Roman tub that was useless for me. So we had it jack hammered out and built a roll in shower in its place.

By 1998 I still only needed a pair of walking sticks or these forearm crutches.

Later I needed to use leg braces along with the crutches.

Beginning in 1998 I used this scooter for long distances.

By 1999 I needed a wheelchair to get around inside the house.

At the end of 1999, I had to close my business and I took up watercolor painting as a hobby.

This was one of the earlier paintings I did.

The Myositis Association invited me to come to the national conference and talk about the positive effect art had on my life.

To take my wheelchair with me I used a ramp van. Inside I transferred to the driver’s seat inside.

Back in those days, all transfers could be done by sliding on a transfer board.

To get onto and off the toilet, I could still do a stand and pivot transfer.

When my wife also got sick in 2006, we moved again, this time to a single-story home.

I added 200 feet of sidewalk so that I could get around the yard on my wheelchair

I loved to garden, and these half barrels made it possible for me to continue.

A few modifications turned an ancient bath into one that was modern, and completely accessible.

I took out the vanity and put in a sink that I could roll under.

I added a shower seat that folded down.

Having lost all dexterity, a bidet was essential for hygiene.

By now, I could no longer transfer within the van, so I added a driver’s side lock down for the wheelchair.

Hand controls were also necessary as I could not move my foot from accelerator to brake.

The new house had a workshop area and I made a lot of use of it for making special tools.

This hook was my most frequently used item. It could open drawers, car doors, refrigerators and lift Coke cartons.

I also made a lot of long poles with a hook on the end for reaching objects and pulling doors shut.

Here is a typical use for one of my sticks.

I made a leg lifter out of shelf liner and it worked great!

I bought a sewing machine so that I could make some of the aids that I thought of but could not find available.

One of my next adaptations was finding a way to use the tiny screwdriver that came with the sewing machine

I was doing most of the cooking but I needed assistance with opening jars.

I also couldn’t use a regular can opener but this one I found on Amazon did the trick.

We expanded the patio because the rest of the yard was gravel and wheelchairs can’t roll there.

I was still trying to paint, but I could not draw with pencil and paper. A new iPad took care of that problem.

Once I lost the ability to stand up on my own, I needed a ceiling lift to make transfers.

Me in a ceiling lift hovering above my bed.

That also meant I needed a different kind of clothing, so I designed and sewed pants that I could put on by laying them on the chair and fastening them around me.

Swollen legs are a major downside of spending so much time in the chair.

I tried many different designs before I found something that would fit onto my feet.

These “shoes” weren’t pretty but at least they covered my feet.

By 2010, driving was becoming very challenging and I started using public transit.

By 2011 it was obvious we could not manage alone. So we hired our first caregiver, Lucia.

But by 2012, even with help we were no longer safe to remain in our home. So we moved to Huntington Manor assisted living.

Here we are on a tour of the facility in the spring of 2012. We moved in shortly thereafter.

Much of our transportation needs were taken care of with MTS access, the San Diego Transit service for disabled.

The summer of 2012 my legs were so swollen that I had to take drastic action so I acquired a pair of CircAid compression garments.

Here you can see the dramatic improvements they made in just a matter of weeks. I still wear them.

Just five months after we moved to Huntington Manor, my wife, Beth, died. Of all the adaptations I have had to make, not having her with me is the most difficult.

When it became more difficult to raise a fork to my mouth, I got this mobile arm support. It helped, for a while.

I thought I would try to take up painting again, But my arms were too weak for conventional equipment. I designed this table which a neighbor built for me however it didn’t help.

Music has always been important in my life and I had played piano since the age of two. This Korg Nano keyboard has enabled me to do a little bit of composition although I can only use one finger at a time.

I don’t know what I would do without my GoPro. It is a great help for taking pictures around the facility to post on their blog.

This is me in late 2013, writing with voice recognition at my computer, hospital bed and TV in the background.

(But I will sing about it.) I wrote and performed this song to encourage myself and others suffering from a serious chronic illness to keep fighting and even enjoy the struggle. Most of the video was shot with my iPhone 4s, editing was done in iMovie, instrumentals created with Band in a Box and Garageband, vocals recorded and final compilation done on a MacBook Pro using Garageband.I Won’t Stand For That

The New Year is often a time for reflection and introspection. So in 2010 I took this opportunity to review the highlights (ho ho) of my journey with inclusion body myositis, along with my wife’s struggle with myotonic dystrophy. This is my second annual update. Sadly, my wife’s struggle ended October 11, 2012.

From time to time, I will talk about the early stages of my illness and describe some of the tools that I found useful.
The photo above was taken about two years after I had been diagnosed. During those early years, I had still not adjusted to my weakened quadriceps muscles. From what I have read on support group forums, I was not alone. You will find yourself walking along perfectly fine, but then the slightest irregularity in the pavement, even the most minor stub of a toe, and you will wind up sprawled on the pavement, bloody and bruised. Although your legs can still support your weight, there is no reserve strength to catch your balance. It is shocking when it happens, both to the one who falls and to those who see it. I was fortunate enough to be referred to a physiatrist who recommended that I get full leg braces. She sent me to an orthotist, Larry Johnson, in the San Diego area, who knew how to make braces out of lightweight carbon fiber materials and equip them with hinges that locked and unlocked automatically with each stride. Those “space-age” braces gave me several more years on my feet. I never would’ve been able to walk more than a few steps in conventional heavy locking braces. However for those who are thinking about braces, please be sure to include a good pair of forearm crutches, as braces may increase your stability, but they actually make you more vulnerable for dangerous falls. Believe it or not, during my last year of trying to continue working, this is the way I would look as I came into a client’s office. At 6’4″, I must have been an intimidating figure.